 (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Approaching the 12-month anniversary of her spinal cord injury, Beth participated in her first seminar for Laraine’s physical therapy students in Toledo. “Beth’s insights and down to earth presentations enlighten students and motivate them to challenge the spinal cord injury patients in their care,” Laraine said. The patient panel included a young married quad who showed the students her intricate embroidery while her adorable toddler played nearby. Another quad, an older man, seemed annoyed when his leg straightened suddenly. He broke the spasm by leaning forward and patiently pressing a fisted hand at the back of the knee on the same leg, a process my daughter would practice and duplicate countless times. “I was one of a few panelists who shared our experiences and answered many questions,” Beth said. “I also participated in the ‘hands on’ part with Laraine showing specific techniques. Then the seminar participants tried the exercises with me while we talked. I hope it helped them understand a patient’s perspective a little better, and also to see that a quadriplegic can do more than is usually expected.” Laraine asked Beth to start the physical therapy routine, to transfer out of her wheelchair with help, to lift an inert leg onto the mat table with a now-stronger arm, and sit up slowly on her own. As she sat in the long-sitting position with her hands in her lap, Laraine gently pushed and prodded her trunk. Beth stayed upright most of the time, winning the battle. The students clapped. To finish the demonstration, Beth wobbled through the steps of the ending routine independently. She tied the laces of her shoes and used her teeth to do the final tightening. It would take more persistent trial and error to complete the task without using her teeth. Laraine asked her to share the progress with her ongoing ponytail quest. Beth scooted forward in her chair and then leaned back to anchor herself for better balance. Her right wrist lifted the hair up from the nape of her neck. She put a standard elastic band around her left index finger and left thumb. With effort, she used her head as an anchor for her hand to move the hair through the elastic band. Unfortunately, it wasn’t tight enough. She kept trying to loop the band around a second time to hold the ponytail in place, determined to do it on her own. Another year would pass before Beth achieved her goal of a perfect messy ponytail. Curious how she does it? Here are two of her videos: www.ablethrive.com/basics/putting-hair-up-in-a-ponytail ...And one that includes tying shoes: www.youtube.com/watch?v=6HT-yjaeCJU
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 (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Beth’s physical therapist, Laraine, showed her how to shift her body to trigger a leg spasm that bent her knees, an invaluable skill for changing clothes in bed. Lying on her back with knees bent, Beth hugged her thighs up and over her body. Feet in the air, she put a pant leg over one foot to begin, the opposite of what most do (putting a foot into a pant). After the pants bunched at her knees, she pushed down on her thighs to straighten her legs. Then, rolling from side to side with effort, she pulled up the fabric a little at a time by hooking her left index finger (the one finger she could partly command) in a belt loop. The first year after her injury, Beth let me take over for the final stretch, though she always tried (and failed) to budge the zipper and hook the button. She refused to consider clothing with alterations, with the exception of flip-flops, her preferred footwear. I added a piece of thin elastic around the back heel and sewed it to each of the side straps so they would stay on. Getting in and out of cars sometimes scraped and smudged her unprotected feet, a consequence she judged to be acceptable. When her legs swelled, Beth used her new skill to deliberately trigger a leg spasm to stretch the muscles, move the blood, and reduce the risk of blood clots. She stayed active, and threw away the white compression stockings. Therapy continued three times a week after school. We met a woman with the same level of injury who proudly showed us her straight fingers on the padded armrests of a power chair, the result of a long concerted effort with hand splints and stretching exercises. Beth asked her favorite therapist for advice about the splints for quads that were generally recommended. As always, Laraine presented both sides of the issue. The rigid splints extended from the fingers to the elbow and could interfere with sleep. Others slept fine with the splints and wore them religiously. Laraine explained that for quads, straight fingers could hinder the ability to grasp items well with the tenodesis reflex. That made it an easy decision for Beth. She discarded the splints and chose more function over form. She owned wheelchair gloves but rarely used them, since she liked the ones with individual fingers that took a long time to put on. When meeting new people, she never hesitated to extend her calloused fist for a handshake, not worried about how her hands looked. Beth’s confidence was growing; she had more at 14 than I had at 42, though I worried about doors being closed to her because of her disability. The first year after her injury, I thought it was inevitable that her attitude would crash and burn at some point. I’m glad that I was wrong. More years would pass before I realized that she had the world at her fingertips, even after her injury. From Beth’s point of view, every door was open.  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
I convinced Beth to take a day off of school to go to the Shriners Hospital. Two volunteer drivers met us in Toledo early in the morning. We left our car there and boarded their van for the four-hour drive to Chicago. The friendly drivers lived in our hometown, Tiffin, and one was the grandfather of a friend. The Shriners Hospital made a colorful first impression, effectively designed to be welcoming for families. Beth and I met individually with each member of a large team at the spinal cord injury clinic, including a urologist, orthopedic surgeon, social worker, occupational therapist, psychologist, and physical therapist. A bubbly nurse took us on a tour of the hospital, pointing out a display for the Make-A-Wish Foundation for children with life-threatening medical conditions. She casually offered to make a referral for Beth, and introduced us to another quad and her mom who recently returned from a cruise in Alaska through Make-A-Wish. My family had rarely traveled. However, the offer bothered Beth. Between appointments, we talked. Make-A-Wish clashed with her wholehearted belief that her “condition” would get better, not worse, based on the one scale that mattered to her—decreasing dependence. She knew that cut spinal cords did not get better, and the medical miracle of re-growing cut cords might not happen in her lifetime. The frightening severity of her recent pneumonia and other risks of quadriplegia did not factor into her decision. Beth turned down the nurse’s offer, certain that others needed Make-A-Wish more than she did. I trusted my daughter’s judgment over my own. The entire team at the Shriners clinic convened with us at the end of the day to make recommendations. We learned that Beth’s damaged back muscles changed the spinal column and worsened curvatures. She acquired two new diagnoses. I had never heard of kyphosis, an outward bowing of the back, but I understood scoliosis, a curvature sometimes resembling the letter S. When I was a teenager, way back when, I had worn the Milwaukee back brace, an antiquated treatment for scoliosis. The brace covered my pelvis, with a metal bar that curved out in the front and connected to a chinrest, making three years of junior high and high school more awkward for me than usual. If the curving and bowing of Beth’s back continued to worsen, her organs could be damaged and major surgery would be needed to straighten the spine with a metal rod. I added back surgery to my ocean of anxiety. I worried for Beth, for the rest of our family, for friends, and for the whole world. The relentless ache in my head dug in deeper, filling the space behind my eyes. I talked to my psychologist every week about pain, guilt, and depression. She told me that guilt could resemble grief and offered rare advice: find things to look forward to. In other words, stop waiting for the next tragedy or health crisis. Easier said than done.  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
After two lost weeks, one in intensive care and one at home, I carried a nebulizer to the high school at lunchtime for Beth’s breathing treatment. Pneumonia had set back her stamina by months. A shortened day of school wiped her out, again. On edge and anticipating the next crisis, I felt an initial flash of fear when the phone rang, and relief when it wasn’t an emergency. For the first time in my life, I understood the compulsion to try to feel better through food. That didn’t work, but not for lack of trying. I joined the ranks of emotional eaters and had to buy bigger clothes. The completed elevator at school led to second floor classes for Beth, which created the need to carry her down the stairs during fire drills. I wrote a detailed procedure and helped a therapist from Green Springs lead the staff training. Several teachers volunteered to attend. The principal had bought a heavy vinyl sheet with four handles, two on each long side, like firemen used. Four teachers carried her on the sheet while a fifth moved her empty wheelchair. Concerned about hitting her head on a step, they lifted the sheet higher with extreme caution. “It took awhile for them to realize I don’t break,” Beth said. She also had a new favorite saying: “I’m not broken and I don’t need to be fixed.” During one drill, her Spanish teacher wore a football helmet to make her laugh. She put up with the drills, but disliked being carried outside on the vinyl sheet into a crowd of students. As more time passed, during a pre-planned drill, Beth talked them into breaking the rules with an unplanned stop inside the building at the bottom of the stairs, to lift her into the wheelchair. From there, she pushed herself outside. Riding the elevator every school day with a friend turned into entertainment. Sometimes they added their own elevator music. They flirted with boys on crutches, injured athletes who also used the elevator. When she accidentally bumped the alarm button and nothing happened, hitting the alarm on purpose became a joke. Beth loved to laugh and found humor in her situation that her close friends and family shared. Being a quad (quadriplegic) meant that you could not flip someone off with a middle finger, so raising a fist instead became a inside joke—though I knew that when she could do it the usual way, she wouldn't. At school, a friend scolded her for not standing up during the Pledge of Allegiance. They made summer plans to go to Cedar Point, famous for its roller coasters, to be first in line because of her wheelchair. At friends' houses or at ours, Beth liked to sit on the couch; when she was asked to get something in another room, she quipped about being tired from too much walking. “Everyone I know with an injury who is doing well has a sense of humor about it,” Beth said. “You need that.” |
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